It's been a while since I posted and I'm in between dr's right now. My appointment is on the 27th. I wanted to ask everyone if they have ever gotten erosions/ulcers in their stomach when having a flare??? Last week I wasn't having a flare and had an upper GI. Today I had another upper GI mind you symptoms of my flares started yesterday. Could the two be related??? I was still a little out of it, (because I don't do well with conscience sedation.) Has anyone else experienced this?? I usually only get the ulcers on hands in my mouth and genitals which all occur in the same places.

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My son gets them in his mouth and they go all the way down though his body out on too his bottom he can't eat or drink and is in the worse pain very he is 9 we have cameras done to see how bad they are on the inside.

I have had ulcers in my gut and stomach also a small bleed. They didn't bother me too much and didnt last long but were deemed at the time to be Behcets. This was at least -10 years ago and until very recently no problems. Just now I have problems and will see a consultant at st marks, London in October.

I'm thinking y'all are right and it's all related to my Bechets. Mine started in my early 20's. Which at the time was only my hands. Thankfully I called my rheumatologist and they are getting me into the office in 2 weeks instead of waiting till February!

I tend to throw up a lot more than my family members for unexplained reasons, considering we all at the same food, so I'm thinking I had an ulcer or two in my digestive track at the beginning of this flare up.

I want to tell you about my journey, ignorant doctors that treated me badly, blood pressure of 228/117, Iron/blood transfussion dependant anemia of chronic disease and more. I have SECONDARY, PROGRSSIVE, NEURO BEHCET'S.

I AM STILL HERE! I don't give up! Be your own best advocate, do research your Doctor doesn't have time to do. ( I use Mayo Clinic, etcu.

We all feel a FLARE coming on - I reduce spicy, acid foods, pineapple can cause/aggrivate oral ulcers. No peanuts, sesame seeds,beans or corn. Anything we don't digest, it passes through whole and can cause gut problems. I let hot foods and beverages cool, before drinking and eating, so it is not too hot in my mouth and esophagus.

I use panty liners (and change them often), so my genitals are clean and dry, it prevents/reduces vaginal ulcers and infection they can get.

Take good care of yourself, give yourself permission to rest and "slack off", on chores during FLARES!

I am sorry this is so long, but many of you have asked me questions about my experience with NEURO BEHCET'S. Some of you are afraid, you might not be here for your children , or what I do for my symptoms. I get flares on top of the progressive symptoms.

Okay, I am going to making this public, if it makes anyone feel uncomfortable and creepy, I am TERRIBLY SORRY.

I AM PREREGISTERED WITH MEDCURE.ORG, ( SEE ON LINE).

I AM GOING TO BE A MEDICAL CADAVER. I HOPE MEDICAL STUDENTS, AND THEIR TEACHERS, WILL LEARN AND ADVANCE THEIR KNOWLEDGE ABOUT NEURO BEHCET'S DISEASE. >>MEDICATIONS CAN'T BE MADE, OR CURES FOUND - WITHOUT ACTUAL DISEASED TISSUE FOR WHAT THEY ARE STUDYING.<

BEING A "MEDICAL CADAVER", EVEN CREEPS OUT SOME OF MY DOCTORS, BUT MOST THANK ME!

I ALSO HAVE 3 GENETIC DISEASES: (BEHCET'S "MAY BE GENETIC".)

HYPERHOMOCYSTIENEMIA

ALPHA ONE ANTITRIPTISINE

HEREDITARY HEMOCHROMATOSIS

I have had Behcet's ulcers from "A-hole to Appetite". They can affect all mucous membranes.

I am 65, I have NEURO BEHCET'S AND ALL THE UNUSUAL SYMPTOMS.. I was not diagnosed until 2009, I have had 2 ,True Pulmonary Embolisms, (P.E.) They formed in the lung. I SHOULD NOT HAVE SURVIVED THE FIRST ONE!

I was told I had a "small bowel blockage". When the prednisone dosage was upped, my bowels, moved and moved - no blockage, most likely an inflammed, swollen, lesion, and ignorant doctors

Most every problem, but NOT ALL problems, is some how BECHETS RELATED BUT HAVE A DOCTOR CHECK IT OUT.

WHEN I GO TO MY LOCAL E.R. AND SAY, I HAVE NEURO BEHCET'S, THEY ASKS ME, " WHAT IS IT? WHAT DOES IT DO? AND HOW DO YOU SPELL THAT?"

I hope this helps many, many of you deal with your illness, your health habits, and fear of dying from this disease. It is treatable, especially if you are kind to your body and yourself, during flares and other problems. Don't give your body things it can't deal with when you are in a flare and allow yourself extra rest.

Every day, when I wake up and put my feet on the floor, I vow to fight this disease today. I do not give myself permission to be a "Bitch," Because I am sick and in pain. Lastly, I will laugh today, inspite of this Devil Disease! Then, I put one foot in front of the other, take a fistful of meds, and keep living for today...